Tuesday, February 2, 2010

First of all, and once again, I need to apologize for not posting any updates in such a long time.

I have been in communication with Gabriella, but at a limited basis, but she has been trying to keep me posted on Mirna's progress.

As expected, this process is taking some time, and while Mirna is a now very able to move the mouse from any direction, she has been having some issues with keeping the mouse stationary and hence, be able to select something from the screen. This is mostly due to her developing strabismus (squint-eye) on one eye and the signals coming into the sensors are being misdirected.

We have provided them with some suggestions on how to minimize this effect and they continue to try. They also continue to struggle with the electrode (sensor) placing as this is the most time consuming part of the setup.

Regardless of all these "hurdles", Mirna continues to be patient and motivated to continue to use the EE system. She continues to be very grateful with all the people that made it possible for her to have this new means of communication.

We will continue to monitor her progress and will post the information on this blog.

Sunday, October 18, 2009

Gabriella has been in constant (weekly) communication with me via email reporting Mirna's progress, but I have not been able to post the information recently and I apologize for it.

Given that the seasons are changing in Guatemala (getting colder), Mirna was affected by the regular flu and hence was not able to practice as much as they wanted over the last few weeks since she was coughing, but as recent as last week, she has gotten much better and has been able to continue practicing with the system.

Gabriella reports that when she aids Mirna with her finger on the screen and asks her to move the mouse on that direction, Mirna seems to have much better control of the mouse. She has been using the keyboard and staggered speech applications and has been able to select certain phrases and letters at will, but they need to continue to work on controlling the mouse so that it does not move around as much. She also reported that they have spend about 30 dollars for rechargeable batteries for the system out of the money donated.

We all knew since the beginning that progress was going to be slow, but knowing Mirna, this progress would be steady and that she would never lose hope of using it to its fullest. We continue to pray for Mirna and her family and that they continue to work hard for Mirna's chance to communicate with all of us freely.

Friday, September 11, 2009

It's been a while since we have posted updates, but it does not mean that Mirna has stopped working on EE. On the contrary, she continues to work very hard every single day in order to take the most advantage of the system.

Gabriella has been sending us weekly updates on her progress, that while is still slow, it continues to be encouraging and motivational for Mirna and everybody around her. Over the last weeks she struggled a little bit on maintaining the mouse on a fixed location on the screen, but after some adjustments to the "radius" option on the EE system, based on Gabriella's reports, Mirna has been able to have much better control of this feature. Also, we have been told that she has been able to gain lot of control on both directions (horizontal/vertical) and that the electrode setting is the most time consuming activity.

Mirna continues to be very motivated by the system and has been practicing on using the keyboard application as well as the phrase application. She has not been able to fully control the system to begin typing phrases on her own, but she has been concentrated mostly on achieving a high degree of accuracy before the applications are put to full use.

Please continue to pray for her progress and at the same time, Mirna and her family continue to be thankful for having the opportunity to use this system and everybody involved in its development and its distribution.

May God bless you all for your constant support and interest on knowing about Mirna's progress.

Thursday, August 6, 2009

I just got an update from Gabriella. She reported that Mirna continues to improve with her accuracy on moving and controlling the mouse and that she has even been able to select letters from the application keyboard. She has been able to type the word "Gracias" which means "Thanks" in Spanish and it is obvious to realize how appreciative she is to have the opportunity to communicate. Gabriella also reported that Mirna is following a very strict schedule where she has her physical therapy in the morning and then she has 2 hours of practice with the EE system in the afternoon. This will enable her to continue to make great progress and very soon, be able to use the system to begin typing short sentences and messages. She will also continue to work on her accuracy to be able to take advantage of the "phrase" input provided by the modified Staggered Speech application.

I also heard from my friend Julio, who jointly with my Dad delivered the backup set of electrodes and he reported that he continues to be amazed of Mirna's progress and how much control she now has of the system.

I would like to mention that Dr. Gips from Boston College has donated the set of electrodes to Mirna's cause and hence the $200 will be kept to be used for any other need that Mirna's family has in terms of obtaining materials from the United States.

Finally, I would like to mention that Mirna's story has been featured on Boston College's EE website (http://www.eagleeyes.org) and that her story will also be featured on OFOAs upcoming newsletter. (http://www.ofoa.net)

Thank you for keeping your prayers for Mirna's progress and it is obvious that these prayers are being heard.

Wednesday, July 29, 2009

The "Cuchumatanes" mountains on the background and the ruins of buildings of the Maya descendants called the "Mam" in the ancient city of Zaculeu, Huehuetenango.

Last Friday was our last day in Huehuetenango and our last day with Mirna. We got together for the last time to check for any other concerns that they may had with the system and to get one last report from the week before. As expected, Mirna had continued to work on the exercises as suggested (mouse movement and control only) and she continued to get better and better every day. Gabriella mentioned that she now has much more control, specially when trying to leave the mouse stationary (key in order to be able to select and click). They also said that the vertical location of the electrodes continued to be the most difficult part of setting the system up and being able to find the best and optimized settings for Mirna to begin her exercises and take the most advantage of the system. We also contacted Ms. Debbie Inkely at OFOA in order to purchase an additional set of electrodes (US$200.00) to keep them as a spare set. Without the electrodes the system is useless and if something were to happen to the existing set, Mirna would not have to wait a long period of time to keep using the system. Finally, Gabriella also reported that Mirna is very excited to use the system and sometimes it is obvious that her eyes are tired, so they have to ask her to stop. This proves Mirna's will to go on and begin using the system to its fullest in order to begin communicating with her family and friends as we all have prayed.

After a few setting reviews, it was time to say goodbye to Mirna and her family. This was a very emotional event as expected, and based on Mirna's very limited facial expressions, it was obvious that we were all upset, but at the same time, very satisfied with all the progress achieved in just a few weeks. In order to avoid getting too emotional and getting Mirna in an uncomfortable state, we said our goodbyes and gave Mirna a big hug and kiss. We then turned to Mirna's mother and on behalf of all the people that had contributed to this cause, we presented her with the remaining balance of the money collected (US$520) and asked her to use it appropriately (as we all know she will). Mrs Ramos (Mirna's mother), also named Mirna, was very thankful and wishes everybody many blessings from God and that your contributions and generosity are given back ten fold.

We all know this is just the beginning of a journey together and that with love, patience and effort, we will see even greater results from our friend Mirna Ramos. She is a fighter and we all pray that with very hard work, one day she will be able to post a little note on this blog to express her emotions and feelings towards all of you that have blessed us all with your generosity and make this endeavor a reality.

Below is a picture of our beautiful little town in the western mountains of Guatemala called Huehuetenango, where a person called Mirna, continues to see life as a chance to make a difference in all of us by showing us that anything is possible with motivation, discipline and hard work.

May the Lord bless you all and please keep checking this blog for more news from Mirna and her progress.

Monday, July 20, 2009

Today was another productive day. After hearing great news from last week, we met with Mirna, her sister and her physical therapist (Olga) this afternoon to review her progress and also to address some concerns presented by Gabriella in terms of horizontal movement and settings.

We met in the afternoon and after a quick greeting, we began with the exercises. It was amazing to see how much control Mirna now has on the horizontal direction and how she has been able to gain much more control of the mouse. We have found the ideal settings in terms of gain and damping and we will continue to use those settings in all sessions. The only problem was presented when we asked her to move the mouse on the vertical direction since we would not detect any signals coming to the EE system. We did everything we could including repositioning the electrodes, applying more conductive gel, cleaning the contact areas from any moisture, testing the electrodes on another person (Julio), etc, but we could not see much more movement on the LEDs on the system. For a moment it was a little bit frustrating, but only to us, since we could not see any sign of frustration on Mirna's part (shows how patient she is compared to the rest of us). We even contacted Doctor Gips at Boston College for assistance, but while waiting for his response, we decided to test the right eye (she has been using the left eye since according to Gabriella, it is the one where Mirna has much more control) and immediately when we did this, she gained full control of the system again. It was very encouraging to see her moving the mouse in all directions (see video) and we were all, once again, having a great time with Mirna. We also adjusted her wheelchair to be in a straight line with the monitor given that she is only able to incline it to a fixed degree.

We asked for permission to take pictures (even a video) and her family accepted without any concern and said that they would want others to be motivated by Mirna's story and have no problems sharing the pictures.

We will reconvene on Wednesday to begin using the software application and in order for Mirna to gain more accurate control of the system. We will move into a more stringent schedule this week while monitoring her diligently to avoid exhaustion.

Throughout last week, Mirna continues to use the system and continues to make progress. Gabriella continues to adjust the settings (gain, damping, etc) in order to find the best values for Mirna's comfort and ease of use. As mentioned on the last post, we detected some potential issues and have contacted Dr. Gips at Boston College for assistance to which he has already contacted us back with suggestions. We will try these suggestions this afternoon as we will try to perform the last set of tests and adjustments before we head back to the states.

My brother Carlos, my friend Julio and others will continue to provide assistance to both Gabriella, her mom and Mirna in order to continue with the training sessions for the following weeks.

The Staggered Speech has been updated (David Karim) for customization and we will work with Gabriella to enter the most commonly used phrases for Mirna's ease of communicating. With the additions, she will be able to type phrases and even sentences with less number of "clicks". AT&Ts text to voice implementation continues to work perfectly and will provide a way for Mirna to "speak out" what she has typed. This will allow Gabriella and her mom to "take a break" and allow Mirna to call for their attention when needed. We have shared this modified version of the program with Boston College so that others can also benefit from the phrase input implementation.

Many friends of Mirna that have learned about this endeavor have requested that we continue to thank each and everybody that has contributed in any way to this cause. They understand the value of being able to provide Mirna a new way of communicating with others and everything that you have done to allow for this to happen and for this, they send their thanks and ask the Lord for his blessings to you all.